BBC: Research in Norwich could offer ME/CFS breakthrough

[veganmua]

["deleder2k, post: 806267, member: 14797"]@veganmua, if you're willing to move from the Great city of London to engage in a trial where there is a 50% you'll receive placebo, perhaps you would be interested in getting treatment in Norway? 2 infusions + 4 maintenance infusions is around £16,500. The hospital is located outside of Stavanger, and you can fly from Gatwick or Heathrow non-stop. The flight time is around 1h 45m.[/QUOTE]
Is this at Kolibri? I'm skeptical that they don't use the same protocol as at Haukeland. I worry that they jumped on the bandwagon when they heard about the positive trials to make a quick buck. It would be more expensive, but I'd trust OMI more.

I didn't realise there would be a placebo. Is it double blind or do the doctors know? Who do I need to bribe/sleep with to make sure I get the drug?!? (I'm mostly joking...)

As my sole income is from sickness benefits, I think moving locally for a free treatment that has a 50% chance of being placebo is still my best bet.

 

[wastwater]

Sounds like progress

 

[deleder2k]

@veganmua, I haven't been to OMI, but Kolibri Medical Hospital in Norway waited until two phase 2 studies had been published. The oncologist there had way more information to make the decision to go through with this or not compared to OMI. It should also be noted that being treated in San Francisco is roughly about 3x times more expensive. It would almost have you to fly long flights frequently to California, or you would have to move there for a while. That won't be needed if you can do an infusion and fly back the same day. I have know quite a few patients who have flown in on the morning. Get the infusion which lasts from 2-6 hours, and then take a flight back the same day. Or you could stay a night or two on hotel if you'd like. I don't know much about Kogelnik, and what his qualifications are. I am sure he is a fine doctor. Dr. Øgreid was the head of the Cancer Department at one of Norway's largest hospital for several years. He has used medicines like cyclophosphamide, and altso rituximab on a daily basis. If Rituximab won't do it for all of us, I am thinking that paying 16,5k quid instead of around 50k, that could leave some financial room for a possible treatment with cyclophosphamide which is a drug dr. Øgreid is not yet offering - but he says he is very comfortable in handling it. Before cyclo is in the question, he'd like to see a good study from Haukeland.

I understand you're concern. The money for all of us that are disabled is limited. But you have to think about some things. You attend the study. Perhaps they say that will keep you occupied for 2.5 years. That means you can't try out anything else in that period. Cyclophosphamide is a drug that is free. The only cost of it is the cost of seeing a doctor, taking bloodwork and have a nurse administrate the infusion. You could wind up in a situation where you join the study, and are stuck there for quite some time. In the meantime someone in Norway - or even in the UK could offer treatment.´by that time.

 

[IreneF]

@deleder2k I can shed some light, Dr Kaufman at OMI says their response rate is similar to the Norwegians.

Do they have any way to predict response or what that means about the nature of the disease in responders vs. non-responders?

 

[Forbin]

Well, trying to read the tea leaves on this, the Norwegians don't know who is getting Rituximab and who isn't, but they are able to see if any of the patients are improving. Would they be in Norwich helping to plan a big upcoming trial if they hadn't seen improvement in anyone?

Of course, it all depends on how the two groups compare when the results are unblinded, but I'm hopeful that their interest in Norwich at least means that they're seeing positive results of some kind, even if they don't know which group they're in yet.

 

[Jonathan Edwards]

Ok, let me get this straight - do I have to move to Norfolk or Suffolk to participate in the trial? Could anyone in the know advise me of exactly which doctor I would need to be under to ensure I am eligible? Or could anyone tell me how I might find out this information? Moving house is a small price to pay for a chance to get my life back!

Dear veganmua,

Please do not try to track down doctors involved in this research. If large numbers of patients clamour to be included in the trial from elsewhere that is the surest way to make the trial not happen. This has already been a major reason why things have been slow. The few doctors treating ME are hugely overstretched and if they get masses of people trying to get on their lists so that they can be in a trial they may well simply walk away from it. I would strongly recommend that the doctors involved do not make themselves known publicly for this reason.

 

[Kati]

Dear veganmua,

Please do not try to track down doctors involved in this research. If large numbers of patients clamour to be included in the trial from elsewhere that is the surest way to make the trial not happen. This has already been a major reason why things have been slow. The few doctors treating ME are hugely overstretched and if they get masses of people trying to get on their lists so that they can be in a trial they may well simply walk away from it. I would strongly recommend that the doctors involved do not make themselves known publicly for this reason.

Wow. It is quite telling. One one side, patients are desperate, and being one of them, I can only understand too well. On the other side, the doctors who are willing to help are either facing disciplinary measures, or are stresed by the enormity of the task and/or by the despair of said patients.

When will come the time when there will be competition in which med students will have to compete to get a residency in the field, and where doctors will race for being the first to publish a discovery that will change the lives of millions?

 

[Jonathan Edwards]

When will come the time when there will be competition in the field in which med students will have to compete to get a residency in the field, and where doctors will race for being the first to publish a discovery that will change the lives of millions?

As soon as we have a solid result from a trial. That might be very soon or we might have to wait a bit longer.

The problem with eager patients for doctors doing trials is not specific to ME. I had a similar problem when starting up in RA. The cohort selection issues were less serious but it was not easy.

 

[Ben H]

What a great piece. I was waiting for it to fall on its arse but alas it did not, I don't think there was a single issue with that coverage.

Well done Norwich Hosp, and all involved.


B

 

[justy]

Yep - fantastic report. I am actually planning on moving to Norwich in around 5 years, so not soon enough to take part in the trial, but living near a centre of excellence for M.E wouldn't be too shabby in the long run anyway.

I feel like we are living in exciting times indeed.

 

[sb4]

Glad to see this getting correct treatment from the news however the poor girl in the video is not doing herself any favors by being constantly surrounded by all that technology. It will be destabilizing her already poorly cells.

 

[Jo Best]

Anyone in UK or able to access the clip on the BBC Look East site, please view and share - http://www.bbc.co.uk/iplayer/episode/b08bbztq/look-east-late-news-26012017

 

[Jo Best]

When will come the time when there will be competition in which med students will have to compete to get a residency in the field, and where doctors will race for being the first to publish a discovery that will change the lives of millions?

Medical students funded by Invest in ME Research, Navena Navaneetharaja and Verity Griffiths, together with Professors Simon Carding and Tom Wileman from the University of East Anglia Norwich Medical School and Institute of Food Research, all based at the Norwich Research Park, co-authored a detailed review, published in June 2016 in The Journal of Clinical Medicine and the first paper from the Norwich team. Navena is now a qualified medical doctor and still involved in the research. She wrote this summary of the paper - http://blogs.ifr.ac.uk/ghfs/2016/07/me-cfs-virome/
Extract -

Our recent review highlights current understanding of the role of infection in triggering Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). We focus on the origin of persistent immune-related symptoms in the condition and describe mechanisms that may explain underlying immune impairment and potential autoimmune processes in ME/CFS, where B cell depletion therapy is of significant therapeutic benefit. We also provide focus for further research by exploring the potential impact of the intestinal microbiome and virome using sensitive study designs.

In full here - http://blogs.ifr.ac.uk/ghfs/2016/07/me-cfs-virome/

eta - Navena also spent three months working with Professor Maureen Hanson at her Cornell lab - an example of the international collaboration integral to the Invest in ME Research Centre of Excellence translational biomedical research strategy.

 

[sarah darwins]

Anyone in UK or able to access the clip on the BBC Look East site, please view and share - http://www.bbc.co.uk/iplayer/episode/b08bbztq/look-east-late-news-26012017

Good idea. Watching now. Enough views there could get the story noticed by the national BBC news room.

 

[Jo Best]

Thank you @sarah darwins yes, good point! I think it deserves a slot in the national news.

 

[AndyPR]

This is the link to the BBC Look East Facebook page https://www.facebook.com/bbclookeast/, there is already a comment praising them for their coverage, to which I've added a comment of my own, liking to comments, or even adding your own, would be a good way of giving them positive feedback.

 

[trishrhymes]

Glad to see this getting correct treatment from the news however the poor girl in the video is not doing herself any favors by being constantly surrounded by all that technology. It will be destabilizing her already poorly cells.

From what I could see, the technology the young woman had looked like necessary feeding equipment, and an i-pad. Hardly 'surrounded by technology'.

 

[Cheesus]

Why are they waiting until the end of 2018 to start? Does it take that long to get a trial set up?

 

[sb4]

From what I could see, the technology the young woman had looked like necessary feeding equipment, and an i-pad. Hardly 'surrounded by technology'.

It looked as though she was wearing headphones (although could be noise damperners) and she will be using wifi to connect to the ipad. All very bad! It's not what you need when you are this ill.

On top of that she isn't getting much natural light probably due to sensitivity but the environment she's in 24/7 sucks.

 

[Jo Best]

Why are they waiting until the end of 2018 to start? Does it take that long to get a trial set up?

I think because the Norwegian trial won't be unblinded until this autumn and then they have to analyse how those results can help design the best possible trial, as they had stated from the outset that they wished to add value to the Phase III trial, so then I guess it takes the further time to proceed through admin and ethics procedures. Daniel Vipond (PhD student) said it took ages to get approval for the foundation study of the research strategy (investigating leaky gut). On the plus side time-wise, the preliminary UK work on B cells has been adding value to the Phase III trial.